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Is it correct to say ME is really EDS ?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by gregf, Nov 19, 2014.

  1. PattyPlum

    PattyPlum

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    As you will remember I said "I personally believe", as this is from my own experience of having ME/AD for 31 years (the POTS coming on 8 years ago) and also anecdotally from reading about the experiences of others with POTS and different forms of AD.
     
  2. Valentijn

    Valentijn Senior Member

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    Okay ... just so that we're clear the the diagnostic criteria and relevant experts who wrote them disagree with your personal opinion :p I'm also fairly sure the 2-day CPET has been attempted with OI patients on a small/trial basis, and they don't share the distinctive ME drop in performance on day 2.
     
    Mij and merylg like this.
  3. PattyPlum

    PattyPlum

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    I said it was my personal opinion from the outset and that did not mislead anyone. I was basing this upon my own experiences and anecdotally from the scores of people I have spoken to about their own experiences.. I am exercise intolerant and also have post exertional malaise and that has been the situation for decades. I have always had issues two days after any exertion.

    I do wonder how many other people do have POTS/EDS and don't know it? I didn't until this recent years. The dysautonomia is greatly underestimated by many people with ME/CFS. Having got my own diagnoses many other people have sought out and managed to get their own.

    Having read a lot of diagnostic criteria about both conditions, this information and study results can vary very much depending on the approach to each research study, the goals/aims and who pays the piper. As a scientist myself, I know this very well to be the case. Read a 1000 scientific papers and another 1000 will dispute their claims. I don't have a closed mind, I like to explore all the possibilities and having experienced these things for myself, I feel pretty sure that this will come out more in due course.

    :p
     
    merylg likes this.
  4. EtherSpin

    EtherSpin Senior Member

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    Melbourne , Australia
    similar make up here. my CFS presented very textbook, have pretty much all the criteria (where only some are needed) by most different clinical sets - the apparent auto immunity , herpes family stuff, nerve damage from one of those etc - it was only mapping out seemingly unconnected but significant problems in my siblings/cousins, aunts, uncles and a parent that led to EDS diagnosis . I wanted to find a link in case it was HHV-6 or some kind of virus that can pass along in chromosomes or similar but specialists were able to see a clear EDS link and then along comes on of my 2 children with more textbook EDS symptoms than myself or any of the rest of us.

    I'm 99% sure its just a predisposing factor to the disease state that is ME/CFS and much like environmental/lifestyle and geographical factors exist.

    I see PEM was mentioned in thread - PEM is 100% present , it baffles me and its one of those things I find almost impossible to fully accept , especially when the wait for the brick wall is sometimes 48+ hours.
     
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  5. wastwater

    wastwater Senior Member

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    I wonder what causes the genetic mutation in the first place and is EDS on the increase
     
  6. EtherSpin

    EtherSpin Senior Member

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    Melbourne , Australia
    these days I lose track of 3/4 of what I read between reading for my daughter (EDS) , self (CFS,POTS,EDS) and the cog fog but I read something by a researcher on the Vascular EDS type, the genes are known for that type and he was saying a drug would likely be ready in 5 years as there are particular collagen factors in short supply in that type. it would be more than great if the other types also just had a shortage of a particular enzyme rather than garbled instructions as to how to form a proper piece of collagen frame
     
    sillysocks84 likes this.

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